Family Coping and Early-Onset Alzheimer’s Disease

Amy Neu, MSW, LCSW

When many of us picture someone with Alzheimer’s disease, we envision an elderly person who had the chance to raise a family, fulfill a career, and have some time to enjoy retirement. This past year Hollywood has shed a fresh light on the topic of Early-Onset Alzheimer’s Disease through the award-winning film “Still Alice,” which has given many Americans a new awareness of the disease and has led us to question our assumptions of those affected by the illness. The Alzheimer’s Association estimates that currently 200,000 individuals under the age of 65 have Early-Onset Alzheimer’s and that many of these people are in their 40’s and 50’s. Early-Onset Alzheimer’s has a multi-generational impact for countless families, leaving parents, spouses, children, and grandchildren struggling to cope.

For many individuals diagnosed with Early-Onset Alzheimer’s Disease, receiving an accurate diagnosis can be a long and frustrating process. Doctors may overlook an Alzheimer’s diagnosis due to age or may attribute symptoms to stress, anxiety, depression, thyroid issues, or menopause. Once diagnosed, many people feel shocked and scared. They wonder how they can continue their normal life activities including maintaining a career, raising children, caregiving for parents, and participating in community events. For those who have a spouse or children, they may also feel guilty for the impending burden to come on their family. While it is difficult, it is essential for those diagnosed to learn more about the disease. This knowledge empowers those diagnosed to understand their possible needs and options for the future. It is critical for those diagnosed to remain socially engaged and to seek support through family and friends.

Spouses of a loved one with Early-Onset Alzheimer’s experience grief and bewilderment over their partner’s diagnosis. They often feel increased financial pressure to earn money due to future costs for their loved one’s care and the possibility of becoming the sole breadwinner for the family. They may also feel the strain to be more readily available to family at home as they face an increasing variety of demanding roles. In the early stages of the disease, spouses often find it helpful to seek more information about the disease with their partner and plan together for the future. Meeting together with professionals such as financial planners, attorneys, doctors, or therapists can help alleviate stress and anxiety about decisions regarding future care. The early stage of the illness is also a good time for spouses to listen to their loved one’s preferences for the future and to talk together about their relationship and changes in domestic roles. Additionally, continuing to do activities as a couple can strengthen the relationship and offer comfort and consistency to both spouses. In the later stages of the illness, reminiscing and continued use of touch may also help a couple maintain a sense of closeness.

An Early-Onset Alzheimer’s diagnosis also has a vast impact on the individual’s children and grandchildren. The ages of the children make a difference in how they can be affected by the diagnosis. Younger children may need reassurance that the disease is not their fault and that they are loved. The book “Flowers for Grandpa Dan” by Connie McIntyre can help young children understand Alzheimer’s disease and give them an opportunity to talk about their feelings and experiences. Teenagers may feel an expectation to help out at home, which may lead to feelings of resentment, anger, or guilt. Young adults often feel torn between caregiving for their parent and moving ahead with their future. Overall, children of any age will benefit from an open, supportive family unit. Allowing children to ask questions and talk about their feelings lets them know that it is okay to express their needs and emotions. If they are having trouble expressing their feelings at home, it is beneficial for parents to seek out counseling or a support group as a healthy outlet. Continuing to do family activities and celebrate traditions also helps children feel safe and secure.

Early-Onset Alzheimer’s Disease is an illness that crosses generational divides and truly affects the whole family. It is essential for all family members to maintain their social supports in order to alleviate stress and anxiety and to cope with the struggles accompanying the illness. Continuing to participate in activities with family and friends, seeking out information about the illness, planning for the future, and talking with a therapist are important methods of coping. Developing and maintaining coping skills enables families to maintain strong connections between members and gives them strength to carry into the future.

Amy Neu, MSW, LCSW specializes in serving the elderly and disabled, along with their families and caregivers. She has significant experience counseling families within medical systems and during transitional periods from home to alternate levels of care.

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